Coordination, anticipation and presentation are key to getting policymakers onside, says Danielle Hamm
Developments in biomedicine, for all their promise, often raise profound ethical challenges that require independent and multidisciplined deliberation.
This can take years. For example, the Human Fertilisation and Embryology Authority issued its first statement on mitochondrial donation in 2010 and approved clinical trials in 2016. The first baby born using the technique—who, strictly speaking, inherited DNA from three people—arrived in May 2023.
The process was a model of its kind and the UK was the first country to approve the technique. Even so, the lengthy nature of ethical deliberations leads some politicians to see them as a restrictive box-ticking exercise and a drag on policy development.
Such attitudes risk exacerbating social inequities and missing the opportunities created by technological advancement. Ethical assessment helps innovation reflect public values, and ensures that regulation is proportionate and balances diverse interests. Being ethically aware can help policymakers get closer to the best choices.
There are quicker ways to gather and use ethical advice. During the Covid-19 pandemic, for example, the UK Pandemic Ethics Accelerator and others, including the Nuffield Council on Bioethics, worked to make ethics a guiding light for those relying on often incomplete and emerging insights to grapple with seemingly intractable dilemmas. For example, ethical guidance helped policymakers, regulators, companies, funders and research institutions to ensure that treatments and vaccines could be developed, accessed and distributed in fair and equitable ways.
The question now is how can everyone working in bioethics maintain an ability to offer agile counsel, and so continue to build policymakers’ trust?
Joining together
Part of the answer lies in a better convening and alignment of the UK bioethics sector. We are more likely to be heard if we speak together; the diversity of voices and expertise across the bioethics sector would more effectively promote the benefit of ethics to society.
A network of active bioethicists would be better placed to design solutions alongside decision-makers, ensuring that ethics matters to them and is seen as an integral part of policy development.
Another part of the answer is to get better at anticipating disruptive developments and technologies.
Bioethicists need a strong grasp of acute issues so that policymakers can get advice in a timely manner. But to make ethical considerations part of both short- and long-term views, ethicists also need to be able to present policymakers with useful information they are not yet aware of. Ethics needs to set agendas, as well as respond to them.
Finally, there is a need to reimagine how ethical advice is presented. Credibility is built on robust, rigorous and multidisciplined methodologies, but political impact will be limited if the only outlet for such work is a doorstop of a report produced after years of analysis.
Questioning in chunks
What’s needed is a modular approach that breaks down large topics into a series of questions so that investigation and reporting can be targeted, and advice can appear in a more succinct and timely manner.
Such an approach, for example, is well suited to confronting research laboratories’ advancing capabilities to create and culture embryo models. This raises several discrete questions, including how long embryos should be cultured in the lab and whether lab-created embryo models should be treated differently to those donated by patients. Exploring these questions one at a time, rather than all at once, would make the resultant reports shorter, prompter and more focused in their recommendations.
Getting our houses in order
With a general election on the horizon, you may think that any immediate effort to make a push for ethics to matter to policymakers will be swept aside in a game of ministerial musical chairs. You’d likely be right, to a degree.
However, some of the changes I am advocating need buy-in from the bioethics sector and research communities before they can be taken up by government. So this year is the perfect time to get our houses in order. Then, after the dust has settled in Westminster, people in biomedical research, ethics and policy will be better-placed to work together for maximum influence and impact.
The bioethics and research community have a responsibility to meet decision-makers halfway—we must adapt our ways of working to present the advice they seek and need in a way that they can best digest and act upon. Only then will ethics be at the centre of decisions about biomedicine and health, so everyone benefits.
Danielle Hamm is director of the Nuffield Council on Bioethics
This article also appeared in Research Fortnight and a version appeared in Research Europe
Update 4/3 The word ‘models’ has been added to the discussion of lab-cultured embryos, to better reflect current scientific and regulatory terminology.